Non-diagnosed, but her son has celiac disease

Monica Beyer is a mom of four and has been writing professionally since 2000, when her first book, Baby Talk, was published. Her main area of interest is attachment parenting and all that goes with it, including breastfeeding, co-sleepin...

back to normal without gluten

Jenni's son was getting sicker and sicker, but it wasn't until she decided to remove gluten from his diet that she saw an improvement.

An allergy?

A friend of Jenni’s had food allergy issues with her daughter and suggested that she keep a food diary to see if there were any patterns she could detect with what Richard ate and his symptoms. She was soon able to pinpoint wheat as a possible culprit, although at the time, she had no knowledge of celiac disease and assumed he was perhaps suffering from a wheat allergy.

Celiac disease, as Jenni now knows, is not an allergy — instead, it is an autoimmune disease where the body of the affected individual creates antibodies and, when gluten is ingested, they attack and damage the microvilli in the stomach and small intestines. Those microvilli are important because they are how we absorb nutrients, and if they are damaged, they can do a world of hurt on the human body. However, since Jenni made the connection between wheat ingestion and Richard’s symptoms, she thought that was the best place to start.

The answer

Jenni decided to remove wheat from Richard’s diet for a week to see what happened. Going without wheat wouldn’t hurt him, and if it was the problem, she’d have an answer. “Within 48 hours I had a completely different child,” she happily remembered. “His moodiness was gone, he was actually able to focus and play with toys (instead of just constantly throwing everything), his rash was completely gone and, most importantly he just seemed happier!”

Soon after, she took him to an allergist to have him tested for a wheat allergy, and was a little confused when it came back negative. However, this sent her on a research mission to find out what the real answer was. “When his testing came back negative for wheat I started doing my own research and came across celiac disease,” she shared. “So many of his symptoms were listed under this — and things finally started making sense.”

Since then, she has removed 100 percent of the gluten from Richard’s diet. Gluten isn’t just found in wheat — it’s also present in barley and rye, and it is also present in ingredients that aren’t quite as obvious. This hidden gluten can be a real problem, so Jenni and other moms with celiac kids do a lot of research before offering food to their children, often contacting the company to make sure there is no cross-contamination during production.

An official diagnosis

In order to be diagnosed with celiac disease, individuals usually have a blood screening test to check for the presence of the antibodies, and if those are elevated, they are referred for an upper GI scope to biopsy the lining of the stomach and the first part of the small intestine. The samples are examined under a microscope, and in the presence of blunted or atrophied microvilli, the diagnosis can be made.

However, you must be regularly ingesting gluten for the test to be accurate. Removing gluten from the diet of a sufferer of celiac disease will totally reverse the symptoms of the disease, and the microvilli will repair itself and the antibodies will disappear.

In Richard’s case, he was already off gluten and has recovered, and both the blood test and biopsy would not be accurate at this point in time. His pediatrician agreed that he likely has celiac disease and wanted to do the blood test, but you need to have gluten in your system for a minimum of two weeks beforehand. “I couldn't put him through that torture,” she explained. “I would have to take him out of school because his symptoms are so severe when he gets glutened. At this point he is so sensitive to gluten that he gets severe belly pain and intestinal issues and his peripheral neuralgia flares up with even minor cross contamination. I honestly think it would be cruel of me to force him to consume any amount of gluten just so he could get tested.”

What the future holds

Jenni said that she will leave it up to Richard if he gets tested or not. “He knows what happens to him when he eats gluten and he knows his symptoms,” she shared. “As he gets older, he may want to get a definitive answer regarding celiac. If he is willing to go through the torture of eating gluten for two or more weeks for the blood test then I will support him on that. But at this point it's not something I feel the need to do. Both me and his pediatrician believe he has celiac, due to the abundance of his symptoms. Whether or not it is actually celiac or just a severe gluten intolerance, the solution is the same — being 100 percent gluten-free.”

Celiac disease awareness grows with every year that passes, so Jenni hopes that it’s tested for more frequently than has been in the past. She suggests getting your child tested as soon as you suspect celiac disease instead of taking them off gluten first. The symptoms vary from person to person, and not everyone will have all of the symptoms (some may just have one or two).

Some common symptoms to look for, however, are stomach pain, diarrhea or constipation, weight loss, anemia, skin rash, enamel damage, joint pain, tingling in the fingers and toes, headaches, fatigue, ADHD, learning disabilities and lack of muscle coordination. But keep in mind, no two celiac diagnoses look alike, so you or your child may not have very many of these exact symptoms.

Jenni feels, given the information she had at the time, that the route she took with Richard was the best one for her family, but she hopes that more doctors and parents suspect celiac disease earlier so they don’t have to worry about going back on gluten to get a definitive answer.

“Talk to your pediatrician,” she urged. “If your child’s doctor doesn't seem to know much about celiac or is just brushing you off, find a different one who will listen to you.”